Lisa Niemi Swayze on Life After Patrick: 'He'll Always Be With Me'

Two years after Patrick Swayze's death from pancreatic cancer, his wife, Lisa, is opening up about their last days together in a new book. Here, she tells Everyday Health about their epic love, how she coped with his loss, and what she's doing now to honor his memory.

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It’s been more than two years since actor Patrick Swayze lost his battle with pancreatic cancer, but his widow, Lisa Niemi Swayze, feels as close to him now as she ever has.

“He’s always going to be with me,” Niemi, 55, tells Everyday Health of her late husband. “We were married for almost 35 years — there’s no way I can ever erase that relationship.”

Not that she’d want to. Niemi and Swayze met in 1970, when she was just 14 years old, and were married five years later in her family’s backyard in Houston. After a brief stint pursuing dance careers in New York City, they relocated to Los Angeles to try their luck at filmmaking — and their lives changed forever. Swayze’s star skyrocketed with roles in movies like Dirty Dancing and Ghost, while Niemi took on smaller parts and became a successful director and choreographer. Their love, however, stayed relatively constant, enduring fame, gossip, alcohol addiction, infertility, a brief separation, and, finally, Swayze’s 2008 stage IV pancreatic cancer diagnosis.

Pancreatic cancer is among the deadliest types of cancer, with an overall five-year survival rate of less than 5 percent. This year alone, 44,030 people will be diagnosed with the disease, and 37,660 will die of it. Most patients live fewer than 10 months after diagnosis. Swayze lived 21.
“He lasted a year and a half longer than he was supposed to,” Niemi says. “And we had some fabulous times. When you may not have somebody for very long, it makes you appreciate each moment together. There’s a lot to be grateful for every day you wake up. Just seeing the sunlight come through the window is a gift.”

Remembering Patrick

Those 21 months of Swayze’s illness, and the 20 or so that followed his death, are the subject of Niemi’s new book, Worth Fighting For , an unflinchingly candid account of the couple’s last years together. Reading it is alternately heartbreaking and life-affirming — as was writing it, Niemi says.

“When I first went into it, I had a friend ask, ‘Are you sure you want to do this? Because it could be really tough,’” she recalls. “But the way I saw it, I wasn’t creating more pain; I was just talking about what I already had.”

Which is not to say it didn’t hurt.

There were days, she recalls, when she’d be writing through tears and need to stop — sometimes for three to four weeks before she could summon the strength to start again.

“There was a lot of stuff that I had been holding on to,” she explains. “It was really hard, but I found that I was able to kind of loosen my grip [by writing].”

In doing so, she found that the story she was telling wasn’t as depressing or tragic as she had feared it would be. “When I started, I thought, ‘This may not be a good idea. We all know how it’s going to end,’” she says. “But once I stepped back from it a bit, I was surprised by how many victories we experienced. We were always getting good news. Things that were supposed to be dire turned out to be just fine. And when there are life-and-death stakes, it blows the bad up really big, but it also blows the good up. It was a pretty inspiring journey.”

Inspiring, but not easy. After Swayze’s diagnosis, Niemi went into full support mode. She organized his medications, took notes at doctors’ appointments — even flew him to cancer treatments at Stanford University Medical Center in Northern California. Caregiver wasn’t a role she had ever expected, but it was a role she embraced wholeheartedly. “Everyone reacts in a different way, and it’s not right and it’s not wrong,” she says. “I just knew that nobody else was going to be as dedicated as I was to his getting better.”

Cancer From a Caregiver’s Perspective

“I tend to be a very organized person,” Niemi adds. “I’m a director, and my mom was a nurse, so I started out with some good, clean habits. But it’s a steep, steep learning curve. When we first started out, I was just desperately afraid that I was going to make a mistake and do something that might compromise his health.”

Her husband, she says, had no such fear. “He completely put his trust in me to take care of him. I was extremely honored.”

As time passed, however, the stress of caregiving began to wear on Niemi. “It can really take a toll on you,” she admits. “Going into the second year [of Patrick’s illness], I thought, ‘I think I’m hitting a wall. What if I can’t go on? What if I collapse?’ It was a terrifying thought.”

Fortunately, Niemi was able to lean on her loved ones for support. Swayze’s brother Don moved in to share the responsibilities, and other family members and friends often came by to visit, giving Niemi a chance to get out of the house and either go shopping or get groceries — anything to get her mind off cancer for a while.

“It’s very hard to talk about an illness when you’re going through it, because when you finally get a break, the last thing you want to do is discuss it with someone else,” she says. But that doesn’t mean caregivers don’t need help. “A lot of friends don’t know what to do — do you call, do you not call? I used to be someone who was afraid to call, but now I’m totally different. If something’s going on with someone, I’ll pick up the phone and just say, ‘I’m thinking of you, and I’m here if you need me. You don’t have to call me back, but I’m here.’”

Losing Love, Gaining Perspective

Swayze’s body eventually grew too weak to withstand treatment — but his spirit never waned. “A lot of people who deal with terminal illness have tremendous existential angst,” Niemi says, adding that she has girlfriends who’ve borne the brunt of that emotion. “Their partners were very, very angry. And scared. But Patrick was unfailingly kind to me. I think in some ways he felt more sorry for me than I did for him.”

There were difficult days, of course, as well as the occasional fight, but in general, the time the couple spent together was loving and happy. “We didn’t talk about death,” Niemi explains. “We were too busy living and trying to keep a positive attitude. We called ourselves optimistic realists. We were both very aware of what the stakes were, but I think because of that, we didn’t need to talk about them. We just knew.”

Swayze passed away on Sept. 14, 2009, with Niemi by his side. His last words to her, she writes, were the same as hers to him: “I love you.” He slipped into a coma shortly after.

Recalling that day now, she says, “is hard. I’m still recovering. [When you first lose someone], the pain is so intense. It feels unsurvivable at times. But it does become more manageable. There’d be a day where I’d actually go three minutes without thinking about Patrick. And then an hour. The loss never really goes away, but you find a way to live with it.”

One thing that has helped is Niemi’s involvement with the Pancreatic Cancer Action Network (PanCan), a nonprofit advocacy organization for pancreatic cancer patients and their loved ones. Niemi is the network’s national spokesperson and an active participant in campaigns to raise awareness and money for research, both of which are scarce. According to PanCan, the disease receives a mere two percent of the federal dollars distributed by the National Cancer Institute — compared with 13 percent for breast cancer — despite fact that it’s the fourth leading cause of cancer death and the only one of the top 10 cancer killers with a five-year survival rate in the single digits.

“It’s shameful, really,” Niemi says. “The people who are fighting this disease deserve the precious commodity of hope.” In an effort to give it to them, she and other celebrities including Dana Delany and Jack Nicklaus recently helped launch the “Volunteer for Progress” initiative to recruit “heroes” (advocates) in the fight against pancreatic cancer.

“As an actor and performer, you always bring what’s honest and truthful in your life into your work,” she says of why she decided to get involved. “If you can’t take tragedy and do something constructive with it, what good is it? There are so many people out there who are in the same position that my husband was in — who want to live as much as he wanted to live. And I’m compelled to reach out and do my best to make that happen for them. Someday, someone is going to get better.”

Were you ever a caregiver for someone with cancer? Share your inspirational story below in the comments!

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